Beyond Batten Disease Foundation

Join us in our mission to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

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  • About Us

    • About the Foundation

      • Mission and History
      • Board of Directors
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    • Funds

      • Bind Up Batten
      • Charles ‘Wheeler’ Stecker Research Fund
      • Chase The Cure
      • Delaney’s Dream
      • Hugs for Hudson
      • Rare Sisters
      • Sofia’s Dream
      • Tyler’s Mission
      • Will Herndon Fund

    • BBDF’s Role and Impact

      • Latest Updates
      • BBDF 101 Treatment
      • The Be Project
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    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Understanding Batten

    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • Living with Batten

    • Family Stories

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      • A Mother’s Story
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    • Contact Us

      Beyond Batten Disease Foundation:

      3305 Steck Ave., Suite 200
      Austin, TX 78757
      Phone: 512.275.2600
      info@beyondbatten.org

      Submit an Inquiry »

  • Research

    • What We Know

      • State of the Science
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
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      • BBDF 101

    • For Researchers

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      Beyond Batten Disease Foundation
      Phone: 512.275.2600
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Volunteer

Beyond Batten Disease Foundation  ⁄  You Can Get Involved in Several Ways  ⁄  Volunteer

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Contact Us

  • 512.275.2600
  • info@beyondbatten.org
  • 3305 Steck Ave., Suite 200, Austin Texas, 78757

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What’s New?

  • BBDF 101 Update April 28, 2022
  • BBDF-101 PHASE I/II TRIAL UNDERWAY February 3, 2022
  • Foundation Helps Sponsor Drafting of Guidelines for Juvenile Batten January 3, 2022

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